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A boy, his brain, and a decades-long medical controversy

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Re: A boy, his brain, and a decades-long medical controversy

#121

Post by midjji »

viraptor wrote: post #76
cowmoo728 wrote: post #33

There seems to be an assumption underlying medicine that things must be true at the population level for them to also be true at the individual level. I think medicine is picking its populations wrong. Example: the skeptical doctor in the article notes that "strep infection is extremely common in children, accounting for as many as a third of all sore throats—but you don’t see droves of kids with abnormal behavior cr…

> Why do we take it as a given that antidepressants should help all of these sub-populations equally? Do we? Antidepressants are a whole class of things. We've got a few options, which indicates we don't expect equal effects. Same with painkillers. Same with statins. Same with migraine medication. These work for the similar problems but depending on the person you will use different one. Sometimes you'll even just cy…

We dont, but we act like we do - Most doctors will try SSRI first despite most knowing they only work for about a third and most doctors will refuse to treat depression using non SSRI antidepressant medication.

Re: A boy, his brain, and a decades-long medical controversy

#122

Post by rscho »

leesalminen wrote: post #6
bigcorp-slave wrote: post #2

This rings true. I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it seems like most doctors operate under “you have symptoms, I order a few tests, they were negative, guess we’ll never know, fuck off lol”. It sucks. I hope these families make progress.

Most doctors today seem to memorize and execute flowcharts and leave creative thinking in undergrad. Anything that deviates from the norm results in “fuck off lol”.

And believe it or not, that's actually very good for patients on average. That's how we came out of authoritarian medicine to get into evidence-based medicine.

Re: A boy, his brain, and a decades-long medical controversy

#123

Post by rscho »

deltaonetwo wrote: post #55
missblit wrote: post #19

Earlier quoted context omitted.

Hickam's Dictum: A man can have as many diseases as he damn well pleases.

I propose another dictum. Call it Delta's dictum. Only a doctor has the intelligence and super human ability to claim that a man has a disease. The man himself is too ignorant and stupid to know anything about his own disease.

You really have an axe to grind with docs, don't you?

Re: A boy, his brain, and a decades-long medical controversy

#124

Post by rscho »

cperciva wrote: post #47
renewiltord wrote: post #17

Earlier quoted context omitted.

As usual this is the result of gatekeeping in the medical industry. It is typical of this industry to kill a million people through inaction to avoid killing one through action. As a bonus, by arrogating the exclusive right to drug prescription and analysis to themselves they can charge what they want. Man deserves true freedom. To self diagnose if one so desires, to kill oneself through incorrect prescriptions if on…

Man deserves true freedom. To self diagnose if one so desires, to kill oneself through incorrect prescriptions if one so desires. The thing is, none of the rules you mention exist to stop patients from doing anything. Rather, they exist to protect desperate patients from con artists selling (sometimes literally) snake oil "cures". I'm reminded of accredited investor rules -- which also chafe at times, but are equally…

This is correct. Am MD and agree fully. GP clearly hasn't thought through all the implications of his statement.

Re: A boy, his brain, and a decades-long medical controversy

#125

Post by mkl »

sterlind wrote: post #10
bigcorp-slave wrote: post #2

This rings true. I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it seems like most doctors operate under “you have symptoms, I order a few tests, they were negative, guess we’ll never know, fuck off lol”. It sucks. I hope these families make progress.

hEDS, the disorder I have, is somewhat controversial like PANS is. the symptoms include hypermobility (overly flexible), spontaneous joint dislocations, widespread pain, joint degeneration, easily damaged skin, fatigue, immune dysfunction and tachycardia. ~2% of the population is hypermobile, but healthy, and don't have those symptoms. hEDS is known to be heritable, but the genes haven't yet been identified. many doc…

I have that too. It took ~25 years from first symptoms to diagnosis. I think part of the problem is that it's likely an umbrella term covering a variety of similar but not necessarily related conditions.

Re: A boy, his brain, and a decades-long medical controversy

#126

Post by Miner49er »

bigcorp-slave wrote: post #14
kevmo wrote: post #3

Earlier quoted context omitted.

Have you been tested for Lyme Disease? I know several folks with it, and they had very awful times (unnecessary surgery even) getting diagnosed.

Yes, and that’s not it. Unfortunately my constellation of symptoms does not seem to match any single entity. I have basically resigned myself to thinking that I may have an unusual genetic immunological or neurological defect. Think (this list is not exclusive or constant, and I go through multi-month cycles of subsets of these symptoms - all of them new onset since getting sick): - assorted chest and abdominal pain…

Have you been checked for any autoimmune diseases?

Sounds like it could be something like Celiac disease.

From what I've seen, most of those are potential Celiac symptoms. But I imagine other autoimmune diseases could also cause these types of symptoms.

This graphic [0] shows some potential Celiac symptoms. A guy surveyed a bunch of people with Celiac for their symptoms and listed the symptoms given more then once. The orange ones are the most commonly given and many of your listed symptoms would fall under the orange ones.

The abdominal pain is especially what makes me think it could be Celiac vs. other autoimmune diseases or something else.

[0] - https://glutendude.com/wp-content/uploads/2021/02/celiac-dis...

Re: A boy, his brain, and a decades-long medical controversy

#127

Post by the-dude »

Pyramus wrote: post #105
mewpmewp2 wrote: post #64

Earlier quoted context omitted.

I think we are leagues out of dark ages, but it doesn't mean we are perfect or anywhere near perfect, or that it would even be possible to be perfect in the field of medicine. People like to think that some X has the perfect answer to any problem we might face, but in fact we don't have answers to very many problems. The ability to solve various problems is not binary.

Interestingly both statements are true. We are both in and leagues out of the dark ages. On average we have progressed tremendously over the last 200 years, say. That means for many diseases, we have made extraordinary progress, as evidenced by life expectancy. At the same time there are many diseases where we are simply touching the surface and have a very basic (maybe even incorrect) understanding. An example that…

Big part of the jump in life expectancy is in hygiene, especially around births.

Then there is a difference between the life expectancy counted from birth, or counted from 18-20+ yrs up.

Re: A boy, his brain, and a decades-long medical controversy

#128

Post by ClumsyPilot »

This reminds me how a doctor had to infect himself in public because no-one would believe him that stomack ulsers are caused bt bacteria: https://www.discovermagazine.com/health/the-doctor-who-drank...

From the fact that we've locked up the inventor of germ theory in a psyciatric hospital, to the recent COViD19 aerosol debacle, medicine is a bit strage.

https://www.bmj.com/content/370/bmj.m3739

Re: A boy, his brain, and a decades-long medical controversy

#129

Post by epmaybe »

maybelsyrup wrote: post #16

> Rita thought back to the winter. She couldn’t remember Timothy coming down with a sore throat, but just before the ski trip she had noticed that the skin around his anus looked a little red. U wot m8 This is a ten year old. My parents were not inspecting that particular feature of my anatomy at that age. What's going on here

I was waiting for this comment. Is it normal for Americans to bathe kids at that age?

Re: A boy, his brain, and a decades-long medical controversy

#130

Post by epmaybe »

intro-b wrote: post #26
maybelsyrup wrote: post #16

> Rita thought back to the winter. She couldn’t remember Timothy coming down with a sore throat, but just before the ski trip she had noticed that the skin around his anus looked a little red. U wot m8 This is a ten year old. My parents were not inspecting that particular feature of my anatomy at that age. What's going on here

that's like the least weird part of this article kid running around the house looking for a towel after showering? asking parents about a weird rash/redness in that area to check out? quickly changing in the family/living room before something?

But the description of rash around Anus was kind of odd, unless the child specifically asked their parents to look. Buttcheeks obscure that area so the other scenarios don’t make sense.
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